In This Section

For Family and Friends

The unexpected arrival of a baby who is premature affects not just the immediate parents but also other children in the family, grandparents, relatives and friends. This section is for family and friends and hopefully it will explain how you can help as often you may be unsure how best to support your loved one when their baby is in the NICU and also it may explain some the problems that parents face when the baby is allowed home.

While your baby is in the NICU, you may feel torn between the new baby in the NICU and siblings at home. Grandparents, extended family and friends will also express an interest in helping but may not know how best to do so. Below are some suggestions:

Supporting Siblings - Siblings can be affected greatly by the arrival of a premature baby. Our guide will provide some suggestions as to how best to ease this traumatic time for siblings.

Grandparents - As a parent and grandparent your role cannot be underestimated when your grandchild is in the NICU. Regardless of where you live we suggest some things that you can do to help the parents.

Friends and Relatives - Following the birth of a premature baby your friends will fall into two categories-those who will be a tower of strength and get straight in there to assist your family during this time of changing dynamics and those who are too fearful or uncomfortable as they don’t know how to face you.

Supporting Siblings

Having a brother or sister in the NICU is a very stressful time for siblings regardless of their age. Toddlers will most likely feel upset as he/she is separated from you whilst older children are more likely to be concerned about the welfare of the baby. Parents should allocate some special time with the siblings at home and explain in terms relevant to the child’s age what is happening to the new baby. It is important to keep all siblings informed as it reduces the stress that they feel and ultimately a less stressed sibling at home will make it easier for you to cope with the unfolding situation. Having a child in the NICU is very time consuming for parents but it’s important to realise that allocating a small amount of time to siblings at home will benefit you in the long term.

What do children feel?

Regardless of the siblings age they will know that a very important event has taken place but children of different ages will express themselves differently. Older children should be encouraged to discuss their feelings opening, ask questions and voice queries. It is important to reassure siblings that their feelings are entirely normal and that you too have the same feelings and concerns. Some of the common concerns of siblings are:

Not knowing why the new baby is still in hospital

Why are Mum and Dad so upset

Anger because the daily routine has changed

Increased separation from parents

Jealousy towards the new baby

Guilt that their anger and jealousy towards the new baby who is taking up so much of parents time may have made the baby ill

Abandonment

Fear that the baby is in pain, suffering or will die

Older Children

You may notice a change in the behaviour of your older children .Some older children regress in their behaviour adopting behaviour associated with younger children. Children will act up, misbehave or even reject you-be patient. This behaviour is the child’s way of seeking your attention. The following are also common behaviours to watch out for:

Increased clinginess

Bad behaviour

Irritability

Setbacks with toilet training

Bed Wetting

Returning to drinking from bottles

Thumb sucking

Sleep problems

Eating problems

Difficulty at school, in social situations or with older people

Tips for Parents

Set aside some special time each day for each of the siblings at home. The smallest of gestures such as a snuggle together, reading a story together, singing songs or preparing a meal together is oftentimes sufficient to reassure the child that you love them.

Tell the truth. It’s important that you answer all questions truthfully. Siblings will have lots of questions and it’s a confusing time for them and they need to feel that you the parents acknowledge their feelings.

Explain in full what’s happening .It should be enough to say the the baby arrived early and is too small to come home from hospital and until he/she gets a little bigger that Mum and Dad may need to be away from the house a little more than usual visiting the baby in hospital.

It’s important to maintain daily routines as best you can. Try to enlist family or friends to continue to bring siblings to ballet, football, music lessons etc

Tell the children that Mum and Dad may sometimes be upset or cry in just the same way as the siblings may cry but that your upset is due to the baby being in hospital

As with every new arrival siblings may fear that you may love them less. It’s imperative that you alleviate this fear. Siblings may feel that they have contributed in some way towards the new baby’s illness or that if they get sick they will need to be hospitalised. Parental reassurance cannot be overestimated in these situations.

Tasks for Older Siblings

It’s important that older siblings get involved with the new baby as early as is possible. Get them to paint pictures for the new baby. Let them select a favourite photo and send it into the NICU. Let them put together a photo album of the new baby. Encourage them to write a story about the arrival of the new baby. Allow them to help decorate the nursery.

Preparing Siblings

Explain the baby’s size to the siblings

Describe the incubator surroundings & that the tubes and wires do not hurt the baby

Show the siblings photographs & video footage of the baby

Explain the purpose of the various machines i.e. the incubator keeps the baby warm, the ventilator breathes for the baby until his/her lungs get stronger, intravenous lines feed the baby because he/she is too small & tired to eat. Explain that the alarms are just to tell the doctors that the baby needs care.

Regardless of age all siblings require support through this difficult time.

Grandparents

Congratulations, your new grandchild has arrived. The joy of the new arrival is mixed with the worry surrounding the baby’s health and how the parents are coping with the premature arrival of their child. Recent advances in medical care for premature children have seen improved mortality rates across the board. As a parent and grandparent your support during this difficult time is vital. It is entirely normal to experience a gammit of emotions associated with the early arrival:-

Anxiety and fear

Anger - why our family?

Worry for your own children and how they will cope

Helplessness towards the situation

Happiness, joy and pride at the birth of your grandchild

Hope for a brighter future

Having a premature baby puts enormous stress on relationships. Your child and their partner are now experiencing a whole host of emotions that neither was prepared for. It is so important to acknowledge their feelings and above all listen to them. The stress associated with the situation may make your child and partner more irritable and short tempered so above all be patient. Parents of premature children tend to blame themselves for the early arrival of their child so they will need a lot of reassurance that they are not to blame. Many important parental decisions may have to be made during the duration of your grandchild’s stay in hospital and it is important that you respond to the decisions made by the parents (many of which may be incredibly difficult ones) and accept that the parents are trying to do their best for the child. Keep the lines of communication open and let your children know that you admire them for the love and care they are showing to the new arrival. Kind words mean so much at this traumatic time.

What can you do?

Offer to take responsibility for some of the daily household chores i.e. laundry, shopping, dropping kids to school or after school activities, caring for pets, cleaning the house. Prepare some home cooked meals and place them in the freezer for the parents. Acknowledge the birth and give the parents a present and card for the new arrival. Useful gifts include premature baby clothing and disposable cameras. Offer to support and care for siblings who will be understandably upset with the new baby being in hospital. A loving grandparent taking over the role of mum or dad will make it easier for the siblings to adjust to the parents being away from home more than usual. Offer to visit your grandchild but ensure you ask the parents how often they would like you to visit. Allow the parents dictate the hospital visits. If you don’t live nearby ensure you call regularly to enquire how your child and grandchild are doing.

Friends and Relatives

After the birth some friends will rally around and be a rock of sense and support whilst others may avoid contacting you not knowing how to deal with the premature arrival of your child. Some friends will be confused as to what you need as a family to help you through the NICU journey so it’s important that you tell friends what you as a family are going to need in the weeks and months ahead. Ask them to assist with grocery shopping, preparing meals, cleaning the house, taking care of pets, minding other children, ferrying children to school or after school activities. It’s important to spell out your needs to friends and family especially if you are a private person who doesn’t display emotion outwardly. Many people will make insensitive remarks but there is no malice meant in their remarks,remember most people have never experience a premature birth and simply don’t know what the correct thing to say is. Gently point out to them if their comment is inappropriate but be sure to also acknowledge positive comments.

Be open and honest about your feelings and emotions. If others know how you are feeling it will make it easier for them to know what to say or do.

Leave a message on your answer machine for people who are enquiring how the baby is doing

If certain friend’s comments continue to hurt gently advise them that your family is going through a traumatic event at present and that you will contact them when the situation settles

Rely on people you can count on. Friends want to help but oftentimes just need firm direction from the parents.

Letter explaining RSV

This letter is courtesy of premmiecare. It explains about RSV and why parents particularily of early premature babies need to be vigilant during the RSV season. To learn more about the virus, visit the website listed below. If you are a parent of a premature baby and have any concerns about the RSV virus, please contact your doctor.

We’d also like to share an important topic that we recently discussed with our babies’ pediatrician. If you are not aware of RSV, respiratory syncytial virus, you are among the majority. Most people have not heard of RSV, even though nearly every child has had the virus by age two. For full-term babies, RSV typically is not any worse than a common cold, but for premature babies, the virus can be quite different. Babies born earlier than 36 weeks are at the highest risk for serious complications like pneumonia, bronchiolitis, and other sometimes fatal complications. Our babies were born premature, are multiples, and had low birth weights; these are among the highest risk factors for contracting RSV and developing serious complications. This website offers a great visual comparison of a premature babies lungs compared to the lungs of a full-term baby:

We’re writing regarding a very important matter: RSV. For those of you who plan to visit us over the next few months, and even if you are not, please take a few minutes to read this letter.We want to start by saying thank you for the outpouring of support we have received from everyone. So many people have done so much for us, and every bit of help we have received truly is appreciated. We are experiencing the biggest challenge of our lives, and we’re lucky to be surrounded by so many family members and friends who have shown us so much love and support.

Preventing the spread of RSV is very difficult. Thus, we must be vigilant about keeping our children safe during RSV season (October through April). The virus is spread through physical contact, in the air via a cough or sneeze, or by touching an infected object. The virus can live as long as six hours on hands and up to twelve hours on objects, and it spreads very easily, especially from child to child. Studies have also shown that infants pose an even higher risk of spreading RSV to others.

You may ask, “Can’t they fight it off and build up their immune system? Kids need to get sick, right?” The simple answer is NO. Since our babies were pre-term, they did not acquire the necessary immunities to fight off infection.If they contract RSV, they could be hospitalized and develop serious complications.

We’ll be asking our visitors to follow a few guidelines to help prevent the babies from contracting RSV or any other illness.

We ask that all visitors do the following:

1. When you arrive, please wash your hands and use hand-sanitizer as needed before touching the babies.

2. Please, if it is possible, get a flu shot.

3. Please refrain from coming over if you are currently sick and have not been symptom-free for at least 5 days, if you live with someone who is sick, or have been in close contact with someone who is sick.

4. If you smoke, we ask that you change your clothing and refrain from smoking prior to visiting, as a premature babies lungs are very sensitive to smoke. Most RSV sites recommend against passive smoke exposure.

5. If you are parents to a baby or toddler, please refrain from bringing them to our house during RSV season.

Unfortunately we will not be attending many events during RSV season. Our goal is to make it through this and the next RSV seasons without the babies contracting RSV or any other serious illness. Their lungs are still very fragile until they are 2-years-old.

Please understand that this letter is not meant to offend anyone, just simply to provide an explanation. We hope you understand, and we appreciate your help keeping our babies safe.

We are also providing several resources with additional information about RSV below.

Practical tips

So you know someone who's had a premature baby?

Advice from Preemie-l - a discussion group of parents of preemie babies. The first thing to recognise is that this is a very difficult and confusing time for the new parents. Having a preemie baby may well be the most stressful things that will ever happen to these parents. They may be at once terribly worried, yet fiercely proud and protective of their new baby. The parents will almost certainly need all the support they can get in a whole range of ways. They may not know how to react, and neither may you. One thing that many parents in our group have reported is the feeling of isolation they encountered, as friends and family avoided them at this critical time of their life. The new parents may be preoccupied, worn down, stressed out, overwhelmed with the roller coaster of their baby's struggle - but they need to know that their family and friends are still there.

Some practical advice.......

Our society has not worked out how to deal with the preemie phenomena yet. The advice below may seem contradictory - that means you have to be careful to tune in to how things are going for the new parents before you follow any of it. Different people react in different ways, and every parent and every baby is different. Still, here are some pointers from our group's experience that may be useful.1. Be sensitive to the emotional strain that the premature birth is placing on the preemie parents. Try not to do anything to make things harder for them.2. The baby or babies may be very sick, so being too congratulatory can be unhelpful. Acknowledge what the parents are going through and their fears for their baby.3. On the other hand, many parents in our group report that the lack of recognition of the new baby by friends and family was distressing Even when the baby's outcome is uncertain, parents appreciate gifts such as baby clothes and toys because they recognise the baby.4. If the parents have other children, do all you can to look after these children, entertain them if that's what they want, comfort them if they are anxious, provide a stress-free haven for them if you can.5. If you send cards or flowers, be thoughtful. Some flowers look like they belong at a funeral. Cards with pictures of plump full term babies can cause distress. Stock messages are often inappropriate. Blank cards on which you write your own message, poem, something from your heart, will probably be much more appropriate.6. Be careful not to place expectations or any sort of load on the new parents - they have a great deal to grapple with, and they may not have the time or the energy even to talk to anyone for a while. Understand if they don't call back. They will still be comforted to know that you are thinking of them.7. If there are any practical things that you can think of which might help the parents, then do them, in the lowest key, most sensitive manner you can manage. If you can mow the lawns, look after pets, clean the house and leave flowers or a prepared meal, it will always be appreciated.8. Food is a wonderful comforter, and preemie parents need all the comforting they can get. Things like supermarket shopping can be unbearable for parents trying to cope with a baby in precarious health.9. Find out if its okay to visit, or how the parents want to manage visitors, and follow their wishes. If you are a close family member, you can volunteer to keep family and friends updated on the baby's health so that the parents don't have to deal with so many people.10. Be there for them. Don't keep away because its hard. Try to stay the distance too - some preemies are in hospital for many months and support from friends and family often drops off over time while the parents are becoming increasingly exhausted with the hospital routine. Often the need for support increases as time goes on.

Here are some voices from our parents ....

"The isolation I felt was the worst. The only thing I asked was that someone - anyone come see my little girl in the hospital! She wasn't deformed, she was just tiny.""Once when [our baby] was having deep troubles my brother just said: "I have absolutely no idea what to say to you." I found his comment honest, complimentary and supportive.""...the doctors had told us that [one of our babies] would die, and [the local twins association] sent us a card with a picture of two beautiful healthy babies that said, "Congratulations on the birth of your twins". I was so hurt.""Just hearing "I'm sorry to hear about the baby" wouldn't have seemed right either. I think I wanted to hear "congratulations" but I wanted people to recognize that my son's birth wasn't completely normal either.""I remember thinking that it didn't matter HOW he ended up, damn it, why weren't people celebrating that he was HERE??? And being really mad at the people who ignored his birth.""I had been on bedrest for 6 months, but I wasn't prepared. Everyone said "congratulations" to me. No one said "I'm sorry your baby is in the NICU." I really wanted some acknowledgement that things were not normal.""What I needed more than anything was someone to drive me to the hospital so that I could see my baby each day. I was much too stressed to be driving all the time and I ended up having an accident. It made things so much worse than they already were.""Everyone and their dog wanted to visit but that meant me getting out of bed post c-section to take them to the NICU every hour on the hour, and the phone rang all of the time, so my sister spent a day in my hospital room beside the phone, and answered all of my calls and read today's update to them all, and met all visitors at the door and asked them to let me sleep and call me the next day for a visit."

Some Resources

You don't have to become an expert on prematurity, but these sites may help you provide support.Two great resources are Kerry Bone's Understanding Preemie Parents http://members.aol.com/KBone91/understanding.html and Allison & Rick Martin's Support for Coping with Prematurity http://www.comeunity.com/premature/ .Rebecca & Steven Pittelko's Imagine Site http://www.waisman.wisc.edu/~pittelko/imagine/imagine.htm will give you some idea of what the new preemie parents may be going through.The Preemie-l Forum http://www.vicnet.net.au/~garyh/preemie_forum/ is a great place to ask questions or to listen in on preemie parents talking about their concerns.The Early Edition newsletter http://www.vicnet.net.au/~earlyed has many good articles on how preemie parents deal with the experience and how friends and family can help.RememberWe are all human and we all make mistakes. The biggest mistake of all is to not reach out to a friend or family in need because of fear of making a mistake.This document is copyright to Preemie-l. It may be reproduced in any format so long as it is reproduced in its entirety, including the contact link to the Preemie-l home page at http://www.preemie-l.org

From premature infant, a NICU nurse and a mum of a premature baby.

Please Do...

Do: Ask me what I like to be called. I may or may not want to be called "mom." I would like to be called by my first name.

Do: Send me a photograph of my baby when I can't get out of bed because I have had a C-section.

Do: When referring to my baby, please don't call him "your baby" (as if he is your baby) or "the baby." He is your patient, but he is my baby. The best possible way to refer to my baby is by calling him by his first name.

Do: Give me a tour of the nursery soon after I arrive so I know where the pumping room is, where to store breast milk, the lounge, bathroom, etc. (Remember if I am groggy or having a difficult time coping, I might need a second tour later.)

Do: Make a cute nametag for my baby's incubator or cot.

Do: If you are the nurse caring for my baby, please introduce yourself acknowledge so I know who you are.

Do: Tell us when I can speak with the doctor.

Do: Promote attachment between parents and their babies. Show me that you are confident I will not cause my child any harm.

Do: Tell me how to read stress cues so I know the best time to touch my baby and when to stop.

Do: Show me how to do things that I can do to help care for my baby.

Do: Realise that once I am able to do some kind of activity for my baby, it is really stressful to have a staff member decline my doing it because they are unable to help.

Do: Acknowledge when we do things correctly.

Do: Tell me how to touch my baby in a developmental and soothing way.

Do: Allow me to hold my baby as early as possible-it is the best part of being a parent.

Do: Help me to do Kangaroo Care as early as possible. Please check on me during this time to make sure I am okay.

Do: Encourage us to make a tape to leave in the incubator; singing, talking, or telling stories for my baby.

Do: Create an environment for my baby that seems healing and supportive (i.e. No harsh lights or minimal noise, but cluster care when possible).

Do: Quietly set things down on the incubator---remember the sound inside is much louder!

Do: Talk to my child and explain that you are about to touch them.

Do: If you find it necessary to shave my baby's head for an IV, please save a lock of hair from the "haircut."

Do: Provide support without judging.

Do: Realise that every parent is different and responds differently. Find out how we want to deal with things.

Do: Understand that parents, like our children, will have "crisis days" and they may not coincide with the status of my baby.

Do: Work to build genuine connections with parents. Even when there is nothing concrete or specific that you can do, your presence, attention, and compassion bring strength and comfort.

Do: Help parent of prems build a community by removing obstacles preventing families from finding comfort in the experiences of others. Do what you can to create an environment in which parents can talk and support one another.

Do: Let us know when tests are being done on our babies (even if it means a quick call to home) and explain what they're for-in parent's terms. (Also let us know if any scheduled tests/procedures have been cancelled and why.)

Do: Let us know that we are allowed to read our baby's chart.

Do: Give us access to as much information as possible. Have a parent library with current books, videos, and a list of websites available. We would love to be able to buy books right there in the hospital-please encourage your gift shop to stock a supply of books and resources that we may purchase to help us through this process.

Do: Give us complete information that is significant to future possible outcomes (concerning all drugs, procedures and alternatives that we can choose from).

Do: Realise that the truth is always easier for us to deal with in the long run. If a bleak prognosis can be expected, that prognosis won't be any easier if it comes as a complete and total shock later on.

Do: Respect parents enough to allow them to feel all their jumbled emotions without running away or minimizing what they feel.

Do: Talk with us about other things than our baby to help us pass the time and get our minds off things (maybe even ask us about the birth or things unrelated to our baby). It's nice to be treated as a friend.

Do: Support us if we are unable to breast-feed/express milk.

Do: Refer me to a lactation specialist if I am having trouble lactating or feeling uncomfortable with pumping milk or breast-feeding.

Do: Do ask me if I would like to have a screen put up when I am trying to nurse my baby, as it is a very exposing experience with these tiny babies. Please check in with me often when I'm behind the screen, especially when the alarms are going off.

Do: Make sure to let me know when my supply of breast milk is running low so I can make sure to bring some in.

Do: Dress my baby in her own clothes whenever possible.

Do: Find out our schedules so we can be there for feedings, baths, and maybe even a quick holding during weights and incubator changes.

Do: Give credence to a parent's intuition about their child. If I tell you, "Something is wrong", act on that information as if it were true.

Do: Congratulate us on our baby's milestones! (Nappys finally taped on, larger nappys, changing to a new type of bed, going to a lower oxygen setting, getting off the vent/CPAP, wearing clothes, learning to suck/swallow, being held, etc.)

Do: If you have not cared for my baby before, please read the chart carefully and note what times I usually come by.

Do: Put graduate pictures of former patients in the waiting room.

Do: Laugh with us.

Do: Treat us like real parents.

Please Don't...

Don't: Call me "Mom." Please ask me what I would prefer to be called.

Don't: Move the baby without telling me ahead of time, or at least meeting me at the door.

Don't: Tell me how I should be feeling or that I "need to be patient."

Don't: Dismiss or diminish my concerns. I am not used to seeing my baby have bradycardias or colour changes.

Don't: Assume that I don't care for or love my baby if I don't touch him. I may be very scared or overwhelmed.

Don't: Tell me my baby had a bradycardia because I was touching him, feeding him, or doing something wrong.

Don't: Please never treat me as if I am stupid. All of the medical terms and information are very difficult to understand and comprehend at times, especially since I am probably feeling a tremendous amount of stress.

Don't: Assume anything about me or my family if we are unable to visit regularly. My family may be very loving and supportive, but cannot come to the NICU for other reasons.

Don't: Sound annoyed or make insensitive comments when I call to check on my baby. The phone is sometimes my only connection to my precious baby.

Don't: Do the tasks that I have already been doing (bath, nappys, feedings, etc.) if you know I am on the way to the nursery. It takes away what little parenting I can do.

Don't: Act as if breast-feeding is not crucial for my baby. There is enough scientific evidence of its importance to preemies that it should be encouraged to breastfeed. However, if I am unable to produce milk, please do not make me feel inadequate by comparing me to all the other mothers who have no problem with lactating.

Don't: Talk loudly or keep the lights on unnecessarily.

Don't: Please be careful to not share information about a baby with the wrong person.

Don't: Talk about a baby in a negative way when the parents are gone.

Don't: Try to instil your personal views (philosophies, religion, or ethics) on us. Allow us the same freedom to choose and have our views, as you were allowed to choose and have yours.

20 tips for family and friends

1.There is no right or wrong way to deal with a premature birth. Parents deal with it the best way they can.

2. Each premature baby is unique, please don’t compare the baby's needs to those of a full-term baby OR to other premature baby. We know you mean well but our baby is just our baby.

3. Instead of saying “Let me know if you need anything”. Do something, make a dinner, do some grocery shopping, cut the grass, do some washing, offer to drive them to hospital, arrange to meet for a coffee.

4. Try be available when parents ask for help. If we ask for help, that means we needed it a long time ago but are just asking now, sometimes it hard to ask for help.

5.If the mum has had a c section offer to drive her to the hospital-she can’t drive for 6 weeks after the birth.

6. Don’t be afraid to buy a gift to mark the baby’s arrival. You can buy appropriate gifts for the family, such as disposable cameras, phone credit, photo albums, journals, scrapbooks, and gift cards. When the baby is home from hospital and you wish to buy a gift find out if the mum is hiring a breast pump or an mr10 monitor and offer to pay some of the costs

7. If you know a mother is expressing milk while her baby is in hospital, try support and praise her. It can be very difficult establishing and maintaining a milk supply when a baby is unable to feed directly from its mother.

8. If there are older children in the family, offer to baby sit so parents can visit the hospital. You could also offer to do the school runs, take them to extracurricular activities after school

10. When asking about the baby's progress, always listen carefully to the parent's response. Then, the next time you speak with them, refer back to the last thing they told you.

11. Offer encouragement during setbacks and gently remind parents of previous obstacles the baby has overcome.

12. Try not to keep asking “when is the baby coming home?" Sometimes parents just don’t know, sometimes it takes not just days, but weeks or months. When the time comes the parents will only be delighted to let everyone know.

13. Don't be fooled by smiling faces. Just because the parents are smiling doesn't mean everything is going well.

14. Try not to offer too much unsolicited advice and don’t discuss the possibility of death or severe complications unless the parents initiate such a conversation.

15. Coming home from the hospital can be stressful for parents, keep in touch and offer your support; it can be by phone, email or text.

16. Provide a friendly ear to listen when needed. Often the emotional side of having a premature baby can be very difficult to deal with. Don’t expect parents to be fine once they are home with the baby. A traumatic experience can take a long time to recover from.

17. Some babies will need numerous hospitals appointments in the months that follow, let the parents know you are there to help.

18.Don’t just assume that premature babies just have to gain weight before they are allowed home-the road from birth to discharge can be fraught with many complications. Our website outlines a few of the many common complications associated with premature birth.

19. Be respectful and understanding to parent’s wishes. They may not want visitors, they may worry about infections, and they may decline invitations. Its not personal, parents are trying to do what they feel is right to protect their baby.